@pmrnew

I can appreciate how confusing it gets. If the goal of taking prednisone was "no pain" then I should still be taking prednisone. Currently, I still have pain which I describe as "tolerable pain." I haven't needed any Prednisone for more than 5 years.

The concept was clearer to me after I tapered off prednisone. My PMR pain was and still is controlled with Actemra (tocilizumab). I was able to taper off prednisone after being on prednisone for 12 years. I still have "normal" aches and pains. I even have some "abnormal pain" caused by other conditions. My other conditions aren't PMR either.

Actemra (tocilizumab) seems like a better medication for me. It effectively treats my PMR inflammation in a way that Prednisone didn't. I don't have PMR inflammation and the pain it causes anymore. Actemra doesn't suppress my adrenal function so my natural production of cortisol regulates the inflammation that isn't caused by PMR.

Other things cause me to have some pain. I can do other things which don't involve medication to relieve the pain. If the pain reaches a certain threshold and I need medication for pain ... I take a different medication but not prednisone.

The difficulty is separating PMR pain and inflammation from other things that cause pain and inflammation. That was impossible for me to do. All pain can't be treated with prednisone. Even if PMR is the only thing causing pain you will never be able to taper off very quickly because prednisone suppresses your adrenal function.
https://www.mayoclinic.org/diseases-conditions/inflammatory-bowel-disease/expert-answers/prednisone-withdrawal/faq-20057923

@pmrnew That’s what’s so great about this forum. We can all share from our experiences and hopefully help one another. Some days I forget I have PMR, and that is miles from where I came from! You’ll get there too.